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Summary
Hepatitis C remains a major public health problem with an estimated 185,000 individuals with chronic infection in the UK1. The
Hepatitis C Action Plan for England, published in 2004, specified areas for action which included surveillance and research,
increasing awareness and reducing undiagnosed infections, high-quality health and social care services and prevention2.
This report focuses on the epidemiology of hepatitis C in London, using in the main, routinely available surveillance data .
Summary
Hepatitis C is a blood borne virus. Infection is usually asymptomatic in the early years. The majority of infected individuals are
unable to clear hepatitis C naturally and without successful treatment chronic infection can span several decades and can be
life-long. Persistent infection can lead to chronic liver disease, and in some cases hepatocellular carcinoma.
An estimated 51,000 people in London are infected with hepatitis C, the majority of whom remain undiagnosed. The number of
laboratory reports of confirmed hepatitis C diagnoses has decreased in London in recent years, with 861 diagnosed in 2009
compared to nearly 1,200 diagnosed in 2006. This may reflect changes in laboratory reporting. The incidence of hepatitis C
appears to be declining, as evidenced by a reduction in infections in younger adults.
Males are more often diagnosed as having hepatitis C than females, with the peak age group being those aged 35 to 44 years
old.
Injecting drug use remains the major risk factor, accounting for two-thirds of hepatitis C cases in London. It is estimated that
three in every five injecting drug users have hepatitis C. In the last ten years sex between men has emerged as an important
route of transmission and has been identified as a risk factor in one in 12 hepatitis C cases. Individuals originating from South
Asia, where the prevalence of hepatitis C is high, are also particularly at risk. In London, one in 33 South Asians tested positive
for hepatitis C in 2009.
If left untackled, hepatitis C infection will result in great costs, both in terms of morbidity and mortality due to chronic disease,
but also in financial costs due to treatment of the late complications of the infection. The estimated cost of treating those
already identified in London is 54 million.
Raising awareness leading to increased testing is important to identify previously unrecognised cases. Unfortunately fewer
tests were conducted in 2009 than in 2005, although there was a slight increase from 2008 to 2009. Since 2005, testing has
increased in primary care, however, testing in drug services has remained static and testing in GUM has decreased.
Prevention is primarily focused on injecting drug users (IDUs) and encouragingly there has been marked success in changing
the reported behaviour of IDUs in terms of sharing of drug paraphernalia.
Treatment can be effective at clearing the virus. It is estimated that over 1,478 people received treatment for hepatitis C in
2009 in London. Accurate figures are not available however as treatment information was only provided by a third of clinics.
It is vital that those testing positive are referred appropriately. However, only half of PCTs in London were reported as having a
treatment care pathway for people with hepatitis C and the provision for prisoners is not clear.
Recommendations
Clear and robust commissioning arrangements for hepatitis C need to be maintained during the current NHS reorganisation.
All primary care organisations should ensure that integrated and robust pathways of care are available for patients with
hepatitis C, ideally coordinated through a clinical network.
Providers of prison health services should develop testing strategies and care pathways that allow equitable access to
treatment services for offenders.
All commissioners of hepatitis C services should review the coverage of hepatitis C testing services in their area and take
measures to increase testing.
Commissioners and providers of services for injecting drug users should ensure that a broad range of prevention services (in
addition to needle and syringe exchange) is available and that a high rate of testing in those attending specialist services for
drug users is maintained. Lead agencies should ensure widespread access to testing for hepatitis C using alternative
specimens (for example, oral fluid and dried blood spot).
Commissioners should ensure that acute trusts provide robust information on the numbers of patients with hepatitis C who
are referred, seen and treated for hepatitis C and their clinical outcomes.
1200
Number
1000
800
600
400
200
0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Year
Laboratories in London do report confirmed hepatitis C diagnoses to the HPA. However, as hepatitis C is usually
asymptomatic and there is no laboratory marker of recent infection, laboratory reports often reflect patterns of testing, rather
than trends in incidence or prevalence3. In addition, laboratories have only been mandated to report since October 2010 and
therefore prior to this reporting is inconsistent and incomplete. These factors mean it is often difficult to accurately interpret
trends in laboratory reports. However, Figure 1 highlights that the number of laboratory reports of confirmed hepatitis C
diagnoses from laboratories in London has decreased from a peak of nearly 1,200 in 2006 to 861 in 2009.
Nine laboratories in London participate in the Sentinel Surveillance of Hepatitis Testing Study which means that they collect
more detailed information about testing (further information on page 10)4. Information from this study indicates that adult males
aged between 25 to 64 years old have more than double the number of diagnoses than females of the same age (Figure 2).
The highest numbers of diagnoses were in males aged 35 to 44 years old followed by males aged 45 to 54 years old and then
in males aged 25 to 34 years old.
The principle risk factor for hepatitis C is injecting drug use. Data on risk exposures are available for around 350 individuals
testing positive between 2002 and 2006 and show that injecting drug use was the main exposure in London accounting for two
-thirds of hepatitis C cases (Table 1). Over the last ten years sex between men has emerged as an important route of
transmission and was a risk factor in one in 12 cases4 (see Box 1 for more information5).
The prevalence of hepatitis C among injecting drug users is known to be high. The HPAs Unlinked Anonymised Prevalence
Monitoring Survey (see page 10) measures the changing prevalence of hepatitis C in current and former injecting drug users
(IDUs)6. In London, this survey estimated the prevalence of hepatitis in injecting drug users to be 59% in 2009, a level similar
to that seen five years before.
Number
2000
1800
1600
1400
1200
1000
800
600
400
200
0
Fema l e
Risk exposure
Ma l e
Percentage of
known cases
IDU
68.6%
Born/lived abroad
9.7%
8.4%
Blood transfusion
5.0%
3.0%
Other
2.0%
Vertical infection
1.7%
Sexual - heterosexual
1.0%
Occupational
0.3%
Blood product
0.3%
Not completed
0.3%
Box 1: Hepatitis C in men who have sex with men (MSM) - Results from enhanced surveillance (SNAHC)5
HPA and collaborators established an enhanced surveillance system, The Enhanced Surveillance of Newly Acquired Hepatitis
C infection in men who have sex with men (SNAHC)5 in January 2008, collecting data prospectively from 22 centres in
London, Manchester and the South East.
Between January 2008 and March 2010, 218 newly acquired hepatitis C cases were reported, 84.4% of which were from
London centres. The median age at diagnosis was 38 years (range 19-62), the majority were UK born (63.3%) and of white
ethnic origin (90.8%). The majority of MSM (94.4%) had already been diagnosed with HIV. The main reason for these men
undertaking a HCV test, was as a result of raised liver function tests (LFTs). A history of intravenous drug use was reported for
21.1% (46/218) of cases, 30 of whom had injected within the previous six months.
Men reported a high number of sexual partners within the three months prior to their diagnosis. The majority had unprotected
insertive and receptive intercourse. The majority of men reported a sexual health screen in the last 12 months, two-thirds of
whom were diagnosed with one or more STI.
Three-quarters described the use of recreational drugs during the previous 12 months. The most commonly reported drugs
were cocaine (61.5%), ketamine (33.3%), ecstasy (31.3%) and methamphetamine (19.8%). Two-thirds of those who reported
drug use, reported having sex whilst under the influence of drugs, with a quarter of these men reporting this as occurring
often.
The findings provide evidence of ongoing sexual transmission of hepatitis C among HIV positive MSM, many of whom engage
in high risk sexual practices and frequently use recreational drugs during sex. This highlights the need for targeted public
health initiatives and continued enhanced hepatitis C surveillance in this group. Furthermore, these data emphasise the need
for hepatitis C assessment for all MSM with abnormal LFTs as well as routine screening for HIV positive MSM.
Other groups have also been shown to be at increased risk of infection, including individuals originating from South Asia where
the prevalence of hepatitis C is high, particularly those born in Pakistan7. Sentinel surveillance indicates that 2.9% of South
Asians tested at London sentinel laboratories between 2005 and 2009 were positive for hepatitis C (Figure 3). Although there
has been a slight increase in testing since 2006, fewer South Asians were tested in 2009 than in 2005.
As most new infections are acquired via injecting drug use, which often begins in late adolescence and early adulthood, the
number of positive tests in individuals aged 15 to 24 years can be used as a proxy indicator of incidence. There does appear
to be a downward trend in the number of 15 to 24 year olds testing positive in the sentinel laboratories in London from 82 in
2005 to 30 in 2009, although numbers are small4. This is in the context of a slight increase in tests in 20 to 24 year olds and a
slight decrease in testing in 15 to 19 year olds (Figure 4). The proportion of tests that are positive is decreasing in those aged
20 to 24 years old (from 2.1% in 2005 to 0.7% in 2009) and 15 to 19 years old (from 1.0% in 2005 to 0.5% in 2009).
It is important to estimate the number of people likely to need treatment to plan services effectively and we have to rely on
modelling for this. To support commissioners, the HPA has developed such a model and in London it is estimated that 51,203
people are infected with hepatitis C8 (Table 2). The estimated number of individuals with Hepatitis C varies from 2,965 in
Camden Primary Care Trust (PCT) to 941 in Barking and Dagenham PCT (Table 2).
Estimates of the future burden of disease and the costs of treatment, based on modelling by the HPA in 2007, are also shown
by PCT in Table 28. The estimated cost of treating those individuals already identified varies between almost 3.1 million in
Camden PCT to 1.0 million in Barking and Dagenham PCT and 54 million for London overall.
15-19 % pos i ti ve
15-19 tes ted
4.0
3.0
2.0
1.0
0.0
Proportion positive
5,400
5,300
5,200
5,100
5,000
4,900
4,800
4,700
5.0
Proportion positive
% pos i ti ve
20-24 % pos i ti ve
20-24 tes ted
2.5
4,000
2.0
3,000
1.5
2,000
1.0
1,000
0.5
0.0
Table 2: Estimates of hepatitis C prevalence, burden, treatment and cost of treatment by PCT in
London8
Mild/
Moderate
Cirrhotic
or end
stage
Died
941
603
30
64
998,351
Estimated
annual
additional
no.
requiring
treatment
15
Barnet
1,478
947
46
100
1,568,779
23
219,629
Camden
2,965
1,900
93
201
3,147,170
47
440,604
1,392
892
44
94
1,477,822
22
206,895
Enfield
1,702
1,091
54
115
1,806,787
27
252,950
Haringey Teaching
1,647
1,055
52
112
1,748,386
26
244,774
Havering
1,014
649
32
69
1,075,922
16
150,629
Islington
2,423
1,552
76
164
2,571,413
38
359,998
Newham
1,595
1,022
50
108
1,693,454
25
237,084
Redbridge
1,409
903
44
96
1,495,045
22
209,306
Tower Hamlets
1,813
1,162
57
123
1,924,323
29
269,405
Waltham Forest
1,139
730
36
77
1,209,259
18
169,296
Brent Teaching
1,650
1,057
52
112
1,751,733
26
245,243
Ealing
1,680
1,076
53
114
1,782,754
27
249,586
1,428
915
45
97
1,515,156
23
212,122
Harrow
1,021
654
32
69
1,084,115
16
151,776
Hillingdon
1,334
855
42
90
1,416,290
21
198,281
Hounslow
1,151
737
36
78
1,221,347
18
170,989
1,515
971
48
103
1,608,250
24
225,155
Westminster
2,141
1,372
67
145
2,272,544
34
318,156
Bexley
1,010
647
32
68
1,071,742
16
150,044
Bromley
1,528
979
48
104
1,621,311
24
226,984
Greenwich Teaching
1,646
1,055
52
112
1,747,580
26
244,661
Lambeth
2,616
1,676
82
177
2,776,473
41
388,706
Lewisham
1,978
1,267
62
134
2,099,474
31
293,926
Southwark
2,559
1,639
80
174
2,715,636
41
380,189
Croydon
2,328
1,491
73
158
2,470,472
37
345,866
Kingston
888
569
28
60
942,101
14
131,894
1,198
768
38
81
1,271,868
19
178,061
2,285
1,464
72
155
2,424,986
36
339,498
Wandsworth
1,730
1,109
54
117
1,836,411
27
257,097
51,203
32,807
1,610
3,472
54,346,953
812
7,608,573
HPU
PCT
North
East &
Central
London
North
West
London
South
East
London
South
West
London
London
Estimated
total
infected
population
Estimated Burden in
2015
Estimated
cost of
treating
those already identified
Estimated
annual
cost of
treating
additional
cases
139,769
The total infected is based on estimates extrapolated from a national or regional level model estimate undertaken in 2003. The estimated
burden in 2015 is the predicted distribution of the above cases based on national level models of progression and incidence. It does not
allow for any additional incident cases, or for the impact of treatment (although the latter is expected to be very small).
The estimated cost of treating those already identified is based on costs estimated by NICE in 2006 and assuming that 50% of the
estimated 2003 infected population had been identified by 2006. The estimated cost of treating newly identified cases each year is based
on diagnosis rates of 7% of the estimated prevalence in 2003. This may include some people who have acquired infection since 2003, and
some that acquired infection some time ago but have newly presented for testing. It does not also allow for those already treated (which is
likely to be small) and is based on historical rates of drop-out.
% pos i ti ve
35,000
34,000
33,000
3
32,000
31,000
1
0
30,000
2005 2006 2007 2008 2009
Number of individuals
tested
Proportion positive
Year
Information from the sentinel surveillance indicates that testing was most often conducted by general practitioners (Figure 6)4.
However, this data does not include dried blood spot testing and oral fluid testing (commonly used in drug services). Trend
data suggests that testing by general practitioners has increased in the last five years, in contrast to testing in GUM services,
which has declined (Figure 7).
Testing in drug services (including dried blood spot testing and oral fluid testing) has increased slightly between 2005 and
2009 (Figure 8). The proportion testing positive for hepatitis C has declined from 40% in 2005 to 27% in 2009.
Figure 6: Number of individuals tested for anti-HCV and the proportion testing positive by service type in sentinel
laboratories in London (2005 to 2009)4
50000
35.0
32.5
30.0
35000
25.0
30000
20.0
25000
15.0
20000
11.4
15000
10.0
8.2
6.2
Primary services
Secondary services
1.3
Unknown
1.5
5.0
2.7
0.0
2.9
Unspecified ward^
Antenatal
Renal
Fertility services
Prison services
Occupational health
GUM clinics
2.0
0.4
0.5
2.8
Obstetrics and gynaecology
3.1
Paediatric services
5.7
4.3
4.2
5000
10000
Unknown
% positivity
40000
General practitioner
Number tested
45000
16000
14000
12000
Number
Occupational
health
10000
8000
GUM clinics
6000
Hospital:
Specialist liver
services
Accident and
emergency
4000
2000
0
2005 2006 2007 2008 2009
Drug dependency
services
Year
Prison services
10%
7%
5%
2%
er
Ot
h
A&
E
0%
Ge
n.
Year
8%
5%
2%
Ot
h
13%
Re
na
l
16%
15%
er
wa
rd
se
m
r
Sp
v
ed
ice
ec
ica
s
ia l
ls
i st
ur
liv
ge
er
ry
se
rv
ice
s
10
19%
20%
ug
20
25%
Dr
30
28%
GU
M
40
30%
GP
1600
1400
1200
1000
800
600
400
200
0
Proportion reactive
50
Number of individuals
tested
% reacti ve
100%
Percentage
80%
60%
40%
20%
0%
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Year
Level of di rect s ha ri ng
Percentage
Percentage
80%
60%
40%
20%
0%
80%
70%
60%
50%
40%
30%
20%
10%
0%
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Year
Year
Number of hospitals/
centres returning
questionnaire data
Number of new
patients seen
Number of patients
starting treatment in
2008
Number of patients
completing treatment in
2008*
28
649
541
481
No.
of
DATs
Proportion
of DATs
with joint
prevention
plans
Proportion
of HPU
involvement in
DAT Prevention
Plan
HPU
No. of
PCTs
Proportion
with treatment care
pathway
No. of
prisons
Proportion of
care pathways
with specific
provision for
prisoners
North East
& Central
London
12
33%
More than
half
13
Less than
half
More than
half
North West
London
38%
Not known
Less than
half
Not known
None
South East
London
100%
All
Not known
None
South West
London
80%
Not known
More than
half
Not known
Not known
5. References
1. Hepatitis C in the UK 2009. London: Health Protection Agency Centre for Infections, December 2009. Available at:
http://www.hpa.org.uk/web/HPAweb&HPAwebStandard/HPAweb_C/1259152221168
2. Department of Health. Hepatitis C Action Plan for England 2004. London, Department of Health. Available at:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4084713.pdf
3. Health Protection Agency. Hepatitis C diagnosis increasing but awareness-raising and rates of testing need to be sustained.
Health Protection Report 4 (19): news. Available at: http://www.hpa.org.uk/hpr/archives/2010/news1910.htm#hcv
4. Sentinel Surveillance of Hepatitis Testing. Available at: http://www.hpa-bioinformatics.org.uk/hepc/home.php
5. The Enhanced Surveillance of Newly Acquired Hepatitis C infection in men who have sex with men (SNAHC). Available at:
http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/HIVAndSTIs/SurveillanceSystemsHIVAndSTIs/hivsti_SNAHC/
6. Unlinked Anonymous Survey of Injecting Drug Users. Available at:
http://www.hpa.org.uk/web/HPAweb&HPAwebStandard/HPAweb_C/12021155191836.
7. Uddin G et al. Prevalence of chronic viral hepatitis in people of south Asian ethnicity living in England: the prevalence
cannot necessarily be predicted from the prevalence in the country of origin. Journal of Viral Hepatitis 2010; 17(5): 327-335.
8. HPA Commissioning Template for Estimating HCV Prevalence by PCT and Numbers Eligible for Treatment. Available at:
http://www.hpa.org.uk/web/HPAwebFile/HPAweb_C/1194947397614
7. Acknowledgments
For further information contact paul.crook@hpa.org.uk
This report was compiled by:
Sandra Johnson
Epidemiology scientist, HPA South East Regional Epidemiological Unit
Paul Crook
Consultant Medical Epidemiologist, HPA London Regional Epidemiological Unit
Grainne Nixon
Nurse Consultant, HPA London Hepatitis Lead, NECLHPU
The report was reliant on the following:
Health Protection Agency Colindale
Sarah Collins, Lisa Brant and Dr Sam Lattimore (Sentinel Surveillance of Hepatitis Testing & oral fluid testing data provided by
Concanteno Plc) - http://www.hpa-bioinformatics.org.uk/hepc/home.php
Dr Vivian Hope (Data from Unlinked Anonymous Monitoring Survey of HIV and Hepatitis in Injecting Drug Users)
Dr Helen Harris & Dr Brenda Thomas (Results of a pilot study to explore feasibility of estimating the numbers of individuals
undergoing treatment for hepatitis C)
Dr Mary Ramsay (Commissioning Template for Estimating HCV Prevalence by PCT and Numbers Eligible for Treatment; general comments and help with co-ordination of data for the template)
10